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BMC Geriatrics
Published in: BMC Geriatrics 1/2017

Open Access 01-12-2017 | Research Article

Mortality patterns and risk among older men and women with intellectual disability: a Swedish national retrospective cohort study

Authors: Nawi Ng, Eva Flygare Wallén, Gerd Ahlström

Published in: BMC Geriatrics | Issue 1/2017

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Abstract

Background

Sweden has closed all institutions and imposed legislation to ensure service and support for individuals with intellectual disability (ID). Understanding mortality among older individuals with ID is essential to inform development of health promotion and disease control strategies. We investigated patterns and risk of mortality among older adults with ID in Sweden.

Methods

This retrospective cohort study compared older adults aged 55 years and older with ID with a control population. Participants were followed during 2002–2015 or death, and censored if they moved out of Sweden. Individuals with ID were identified from two national registers: one covering all specialist health-care visits (out-patient visits and hospitalisation) and the other covering people accessing social/support services. Individuals with ID (n = 15,289) were matched with a control population by sex, birth year, and year of first hospitalisation/out-patient visit/access to LSS services. Cause-of-death data were recorded using International Classification of Diseases, Tenth Revision. Cox proportional hazards regression were conducted to assess if overall and cause-specific mortality rate among individuals with ID was higher than in the Swedish population.

Results

The overall mortality rate among individuals with ID was 2483 per 100,000 people compared with 810 in the control population. Among those who died, more individuals with ID were younger than 75 years and unmarried. Leading causes of death among individuals with ID were circulatory diseases (34%), respiratory diseases (17%) and neoplasms (15%). Leading causes of death in a sub-sample with Down syndrome (DS) were respiratory diseases (37%), circulatory diseases (26%) and mental/behavioural disorders (11%). Epilepsy and pneumonitis were more common among individuals with ID than controls. Alzheimer’s disease was common in the control population and individuals with DS, but not among those with ID when DS was excluded. Individuals with ID had a higher overall mortality risk (hazard ratio [HR] 4.1, 95% confidence interval [CI] 4.0–4.3) and respiratory disease death risk (HR 12.5, 95% CI 10.9–14.2) than controls.

Conclusion

Older adults with ID in Sweden carry a higher mortality risk compared with the general population, mainly attributable to respiratory, nervous and circulatory diseases. Care for this group, particularly during the terminal stage of illness, needs to be tailored based on understanding of their main health problem.
Appendix
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Literature
1.
Coppus AM. People with intellectual disability: what do we know about adulthood and life expectancy? Dev Disabil Res Rev. 2013;18(1):6–16.CrossRefPubMed
2.
Patja K, Iivanainen M, Vesala H, Oksanen H, Ruoppila I. Life expectancy of people with intellectual disability: a 35-year follow-up study. J Intellect Disabil Res. 2000;44(Pt 5):591–9.CrossRefPubMed
3.
Englund A, Jonsson B, Zander CS, Gustafsson J, Anneren G. Changes in mortality and causes of death in the Swedish down syndrome population. Am J Med Genet A. 2013;161A(4):642–9.CrossRefPubMed
4.
Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A, Russ L. The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet. 2014;383(9920):889–95.CrossRefPubMed
5.
Robertson J, Hatton C, Baines S, Emerson E. Systematic reviews of the health or health care of people with intellectual disabilities: a systematic review to identify gaps in the evidence base. J Appl Res Intellect Disabil. 2015;28(6):455–523.CrossRefPubMed
6.
Forsgren L, Edvinsson SO, Nystrom L, Blomquist HK. Influence of epilepsy on mortality in mental retardation: an epidemiologic study. Epilepsia. 1996;37(10):956–63.CrossRefPubMed
7.
Hill DA, Gridley G, Cnattingius S, Mellemkjaer L, Linet M, Adami HO, Olsen JH, Nyren O, Fraumeni JF Jr. Mortality and cancer incidence among individuals with down syndrome. Arch Intern Med. 2003;163(6):705–11.CrossRefPubMed
8.
Gustavson KH, Umb-Carlsson O, Sonnander K. A follow-up study of mortality, health conditions and associated disabilities of people with intellectual disabilities in a Swedish county. J Intellect Disabil Res. 2005;49(Pt 12):905–14.CrossRefPubMed
9.
Gillberg C, Billstedt E, Sundh V, Gillberg IC. Mortality in autism: a prospective longitudinal community-based study. J Autism Dev Disord. 2010;40(3):352–7.CrossRefPubMed
10.
Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bolte S. Premature mortality in autism spectrum disorder. Br J Psychiatry. 2016;208(3):232–8.CrossRefPubMed
11.
Tøssebro J, Bonfils IS, Teittinen A, Tideman M, Traustadóttir R, Vesala HT. Normalization fifty years beyond—current trends in the Nordic countries. J Policy Pract Intellectual Disabilities. 2012;9(2):134–46.CrossRef
12.
Nirje B. The normalization principle and its human management implications. SRV-VRS: Int Social Role Valorization J. 1994;1(2):19–23.
13.
SFS 1993:387. Lag om stöd och service till vissa funktionshindrade (LSS) [Act concerning Support and Service for Persons with Certain Functional Impairments]. Sweden: Socialdepartementet [Ministry of Health and Social Affairs].
14.
SFS 2001:453. Socialtjänstlag (SoL) (Social Services Act). Sweden: Socialdepartementet (Ministry of Health and Social Affairs).
15.
Haveman M, Perry J, Salvador-Carulla L, Walsh PN, Kerr M, Van Schrojenstein Lantman-de Valk H, Van Hove G, Berger DM, Azema B, Buono S, et al. Ageing and health status in adults with intellectual disabilities: results of the European POMONA II study. J Intellect Develop Disabil. 2011;36(1):49–60.CrossRef
16.
Axmon A, Karlsson B, Ahlstrom G. Health care utilisation among older persons with intellectual disability and dementia: a registry study. J Intellect Disabil Res. 2016;60(12):1165–77.CrossRefPubMed
17.
Sandberg M, Ahlstrom G, Kristensson J. Patterns of somatic diagnoses in older people with intellectual disability: a Swedish eleven year case-control study of inpatient data. J Appl Res Intellect Disabil. 2017;30(1):157–71.CrossRefPubMed
18.
Torr J, Davis R. Ageing and mental health problems in people with intellectual disability. Curr Opin Psychiatry. 2007;20(5):467–71.CrossRefPubMed
19.
Axmon A, Bjorne P, Nylander L, Ahlstrom G. Psychiatric care utilization among older people with intellectual disability in comparison with the general population: a register study. BMC psychiatry. 2016;16(1):389.CrossRefPubMedPubMedCentral
20.
Patja K, Molsa P, Iivanainen M. Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study. J Intellect Disabil Res. 2001;45(Pt 1):30–40.CrossRefPubMed
21.
22.
Lunsky Y, Klein-Geltink J, Yates E. Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario. Toronto, Ontario: Institute for Clinical Evaluative Sciences and Centre for Addiction and Mental Health (ICES); 2013.CrossRef
23.
Swedish National Board of Health and Welfare: Still unequal - living conditions for people with functional impairments. In. Stockholm: National Board of Health and Welfare; 2010.
24.
Tyrer F, McGrother C. Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability. J Intellect Disabil Res. 2009;53(11):898–904.CrossRefPubMed
25.
Glasson EJ, Hussain R. Linked data: opportunities and challenges in disability research. J Intellect Develop Disabil. 2008;33(4):285–91.CrossRef
26.
Westerinen H, Kaski M, Virta L, Almqvist F, Iivanainen M. Prevalence of intellectual disability: a comprehensive study based on national registers. J Intellect Disabil Res. 2007;51(Pt 9):715–25.CrossRefPubMed
27.
Ng N, Sandberg M, Ahström G. Prevalence of older people with intellectual disability in Sweden: a spatial epidemiological analysis. J Intellect Disabil Res. 2015;59(12):1155–67.CrossRefPubMed
28.
StataCorp. Stata Statistical Software: Release 13. College Station, TX: StataCorp LP; 2013.
29.
Lauer E, McCallion P. Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. J Appl Res Intellect Disabil. 2015;28(5):394–405.CrossRefPubMed
30.
Maenner MJ, Greenberg JS, Mailick MR. Association between low IQ scores and early mortality in men and women: evidence from a population-based cohort study. Am J Intellect Dev Disabil. 2015;120(3):244–57.CrossRefPubMedPubMedCentral
31.
Ouellette-Kuntz H, Shooshtari S, Balogh R, Martens P. Understanding information about mortality among people with intellectual and developmental disabilities in Canada. J Appl Res Intellect Disabil. 2015;28(5):423–35.CrossRefPubMed
32.
Heslop P, Glover G. Mortality of people with intellectual disabilities in England: a comparison of data from existing sources. J Appl Res Intellect Disabil. 2015;28(5):414–22.CrossRefPubMed
33.
34.
McCarron M, Carroll R, Kelly C, McCallion P. Mortality rates in the general Irish population compared to those with an intellectual disability from 2003 to 2012. J Appl Res Intellect Disabil. 2015;28(5):406–13.CrossRefPubMed
35.
Yen CF, Lin JD, Chiu TY. Comparison of population pyramid and demographic characteristics between people with an intellectual disability and the general population. Res Dev Disabil. 2013;34(3):910–5.CrossRefPubMed
36.
Tyrer F, Smith LK, McGrother CW. Mortality in adults with moderate to profound intellectual disability: a population-based study. J Intellect Disabil Res. 2007;51(Pt 7):520–7.CrossRefPubMed
37.
Glover G, Williams R, Heslop P, Oyinlola J, Grey J. Mortality in people with intellectual disabilities in England. J Appl Res Intellect Disabil. 2017;61(1):62–74.CrossRef
38.
Torr J, Strydom A, Patti P, Jokinen N. Aging in down syndrome: morbidity and mortality. J Policy Pract Intellectual Disabilities. 2010;7(1):70–81.CrossRef
39.
de Winter CF, Bastiaanse LP, Hilgenkamp TI, Evenhuis HM, Echteld MA. Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: results of the HA-ID study. Res Dev Disabil. 2012;33(6):1722–31.CrossRefPubMed
40.
Young C, Shankar R, Palmer J, Craig J, Hargreaves C, McLean B, Cox D, Hillier R. Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk? Seizure. 2015;25:112–6.CrossRefPubMed
41.
Robertson J, Hatton C, Emerson E, Baines S. Mortality in people with intellectual disabilities and epilepsy: a systematic review. Seizure. 2015;29:123–33.CrossRefPubMed
42.
Foley NC, Affoo RH, Martin RE. A systematic review and meta-analysis examining pneumonia-associated mortality in dementia. Dement Geriatr Cogn Disord. 2015;39(1–2):52–67.CrossRefPubMed
43.
Watchman K. Intellectual disability and dementia: research into practice. London: Jessica Kingsley Publishers; 2014.
44.
Di Stefano A, Iannitelli A, Laserra S, Sozio P. Drug delivery strategies for Alzheimer's disease treatment. Expert Opin Drug Deliv. 2011;8(5):581–603.CrossRefPubMed
45.
Swedish National Board of Health and Welfare. Vård, insatser och stöd till personer med funktionsnedsättning (translated "Health care, actions and support for persons with disability"). In: Jupiter J, editor. Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst Lägesrapport. Stockholm: Socialstyrelsen; 2013. p. 2013.
46.
Cobigo V, Ouellette-Kuntz H, Balogh R, Leung F, Lin E, Lunsky Y. Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities. J Appl Res Intellect Disabil. 2013;57(5):478–88.CrossRef
47.
Wilkinson JE, Lauer E, Freund KM, Rosen AK. Determinants of mammography in women with intellectual disabilities. J Am Board Fam Med. 2011;24(6):693–703.CrossRefPubMedPubMedCentral
48.
Nylander L, Fernell E, Bjorkman M. Adults with intellectual disability, a neglected group in health care (in Swedish). Lakartidningen. 2014;111(39):1648–50.PubMed
49.
Rose J. How do staff psychological factors influence outcomes for people with developmental and intellectual disability in residential services? Curr Opin Psychiatry. 2011;24(5):403–7.CrossRefPubMed
50.
Public Health Agency of Sweden. Pubilc Health in Sweden - Annual Report 2014 In Swedish: Folkhälsan i Sverige - Årsrapport 2014. Stockholm: Public Health Agency of Sweden; 2014.
51.
Bailly L, Daures JP, Dunais B, Pradier C. Bayesian estimation of a cancer population by capture-recapture with individual capture heterogeneity and small sample. BMC Med Res Methodol. 2015;15(1):39.CrossRefPubMedPubMedCentral
52.
Merrick J, Davidson PW, Morad M, Janicki MP, Wexler O, Henderson CM. Older adults with intellectual disability in residential care centers in Israel: health status and service utilization. Am J Ment Retard. 2004;109(5):413–20.CrossRefPubMed
Metadata
Title
Mortality patterns and risk among older men and women with intellectual disability: a Swedish national retrospective cohort study
Authors
Nawi Ng
Eva Flygare Wallén
Gerd Ahlström
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2017
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-017-0665-3

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